A roadmap to advance dementia research

A ROAD MAP TO ADVANCE DEMENTIA RESEARCHDr. Clarissa Giebel, PhD; The University of Liverpool

Background

People with dementia experience difficulties with a whole range of symptoms, from managing their finances (Giebel et al., 2018), to problems with their memory (Tchakoute et al., 2017) and changes in their behavior (Breitve et al., 2018). To help people with dementia - and their caregivers - live the best life possible, it is important to understand how this can be improved throughout the care pathway, from prevention to diagnosis, all the way through to intervention and care.

While there is so much dementia research out there aimed at finding a cure and improving life quality for people living with dementia, it is really important to set priorities on where to focus next. When we set priorities, we can address those issues considered to be most important by researchers, but also by people providing care, and most importantly, by people living with dementia and their caregivers.

In this blog, I am looking at a recently published paper by Pickett and colleagues (2018) on a roadmap to advance dementia research in prevention, diagnosis, intervention, and care by 2025.

Methods

This taskforce was set up by the Alzheimer’s Society, who invited a wide range of leading experts and emerging leaders in their fields within dementia, including backgrounds from gerontology, psychology, health economics, primary care, public health, social care, as well as lived experience.

In order to develop priorities for dementia research and care, the taskforce attended three face-to-face meetings, five teleconferences, and were all interviewed once each. Additionally, once they had created a draft of the goals and recommendations, they distributed these online for feedback by mostly researchers, as well as people living with dementia and their caregivers. Sixty people provided feedback on these goals and recommendations.

Once the priorities and recommendations were finalized, the taskforce met with additional stakeholders and people with dementia and their caregivers at a half-day workshop. At the event, small group discussions were held to develop an action plan to effectively translate these goals into practice.

Results

The taskforce identified five goals to be addressed until 2025. However, it was acknowledged that the translation of evidence and turning it around into practical applications might take longer.

The first of the five goals was to “Prevent future cases of dementia through increasing knowledge of risk and protective factors”. This includes conducting epidemiological studies, developing and testing interventions, and better communication to increase awareness.

The second goal was to “Maximize the benefits to people living with dementia and their families when seeking and receiving a diagnosis of dementia”. This would involve better understanding of regional and socio-economic differences in diagnosis and service usage/ quality, models of post-diagnostic support provision, and pathways of care.

The third goal focused on “Improving quality of life for people affected by dementia, by promoting functional capabilities and independence, while preventing and treating negative consensus of dementia”. In order to improve the quality of life, it is important to promote everyday functioning, improve social interaction, housing layouts, and strongly involve the public in co-producing research.

The fourth goal was to “Enable the dementia workforce to improve practice and skills by increasing evidence to inform changes in practice and culture”, which could be achieved by transfer of knowledge.

The fifth and final goal was to “Optimize the quality and inclusivity of health and social care systems that support people affected by dementia”. In order to do so, it is important to understand differences in care services, innovative models of health and social care, and support people with dementia and their caregivers to better access services.

Conclusions

It appears the taskforce went through a thorough process of identifying these five goals, by having a variety of experts and members of the public involved in co-producing these goals. As a dementia researcher myself, we are aware that many of these issues need to be addressed. Having them brought up through a methodologically sound investigation however helps to have a solid document to which to refer. What’s more, it will hopefully raise awareness outside our bubble of dementia researchers and clinicians, and highlight to everyone how much more really needs to be done to ultimately help improve the lives of people living with dementia and their caregivers.

Strengths and limitations

One of the strengths of this roadmap is the thorough process of identifying the goals and recommendations by involving a wide range of experts and people having direct lived experience of the condition. This ensures that different opinions were captured.

Not a limitation of the study as such, but recommending changes by 2025 may appear too enthusiastic. Considering the time it takes for researchers to develop funding proposals, and studies generally taking between 3 to 5 years, it may be necessary to extend the timeline until 2028 or 2030 for example. It is possible some studies might not find significant results, so that other studies might need to follow.

Implications for practice

The taskforce has come up with a 10-point action plan, to help put the five identified goals into action:

10-point action plan

Increasing funding available for research

Streamlining set-up processes of research

Advancing public and patient involvement

Advancing research methods

Enabling research to be more inclusive

Initiatives to support study recruitment

Increasing data storage and reanalysis

Increase involvement of professional stakeholders in research

Support knowledge exchange and research practices that facilitate uptake and implementation of findings

Creating effective researcher networks

These 10 actions seem valuable and are important to put into practice. For example, the National Institute for Health research has already set up a new researcher network for early career researchers, called the ‘Dementia Researcher’. The network provides regular updates on topics that are relevant for us early career researchers, such as information on submitting grant proposals. But it also offers the opportunity to network outside the realms of twitter or conferences.

However, so much more needs to be done to advance dementia research, as the taskforce has described. It is still a long way to improve dementia care, but working up and summarizing the important next tasks is a first step in this direction. Let’s hope that this action plan will result in more positive changes than previous ones!

Dr. Giebel is a dementia researcher specializing in everyday functioning and enabling people with dementia to stay in their own home for as long as possible. In her current role at the University of Liverpool and at the NIHR CLAHRC NWC, she particularly focuses on health inequalities in people with dementia and their carers, working on both national and international projects.

Excerpted as reprint from the IPA Bulletin, Volume 35, Number 4
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